Patient registries: a practical guide for patient organizations

This course is designed for patient organizations, with a specific focus on rare disease patient organizations, aiming to build efficient patient registries for their disease.

What can you expect by the end of the course:

• Gain clarity on considerations regarding choosing patient registry platform and developing survey
• Understand realistic and practical steps you can take to ensure quality of your data
• Understand differences between natural history study and registry and determine which one better aligns with your objectives and capabilities
• Learn about linking your registry data with other data sources
• Gain insights into FDA guidances on natural history studies, patient registries, and use of data as an external control arm
• Understand how to make your registry useful to researchers and industry
• Gain knowledge and confidence in developing your registry strategy

You will be able to download:

• List of resources
• Definitions
• Patient registry platform checklist
• Survey development checklist

Who Should Enroll: This course is ideal for leaders, members, and volunteers of patient advocacy organizations who are involved in or interested in developing efficient patient registries. This course can also be highly valuable to researchers and industry representatives who are working with patient organizations or are interested in using patient-developed registries.

Course Format: Available entirely online, this self-paced practical course features 15 modules in order to empower patient organizations to develop efficient and useful registries.